Wednesday, November 27, 2013

The autism community has been galvanized by the recent
resignation of John Robison from his role at Autism Speaks, the largest and
most powerful autism advocacy organization in the world, due to comments from
founder Suzanne Wright. Robison, who has Asperger’s, acknowledges that autism
confers “both gifts and disability on everyone it touches.”

Robison vehemently disagreed with Mrs. Wright’s description
of autism as a “monumental health crisis” devastating the lives of millions of
families around the world, leaving them depleted, both emotionally and
financially.

Mr. Robison and Mrs. Wright, you are both right. I know
individuals on the spectrum like Alex Plank, the founder of Wrong Planet, who
are higher functioning and far more talented than most of my friends. But come
to my offices at ACT Today! and look at the files from families who have
received or are awaiting grants. There’s a different story to tell. Read about
the grandparents living on Social Security who want behavior therapy for their
13 year old grandson, abandoned by his parents, so he can be toilet trained and
learn to dress himself before they die, so in their words, he will have “less
of a chance of being sexually molested in a home”. Read the requests of a
single mother who works the night shift and moved back in the 2 bedroom house
of her parents, who wants an iPad so her non-verbal child can type "I love you",
words she will never hear spoken. Read the request from the father who wants to
help his son stop the severe repetitive behavior of picking at his infected
eye, which doctors will have to remove if something cannot be done.

These voices deserve to be heard as well, and it is
downright shameful, that in a country as wealthy as the United States of America, that they
need to apply to a nonprofit to get help.

As a nation, we need to become more accepting of autism and
those with it, and we need a
national plan to help the legions of families that have members who are lower
functioning and cannot get the care and treatment they need. I once met with
the Chairman and CEO of a major entertainment conglomerate, who generously
agreed to run a public service announcement on autism awareness for the
military family, then who asked me “Why are there so many of you? (meaning
autism organizations) and why can’t you guys come together?” Indeed, why can’t
we?